IVF with endometriosis and PAIN! :(

Hey ladies,

I'm doing my second fresh round of IVF (1st was back in 2012 where I was diagnosed with endo) I've had 1 natural chemical pregnancy and 3 chemical pregnancies from frozen cycles over the past few years. So to say I'm not very hopeful this will work is an understatement.

So we are doing long protocol. I've already done just over two weeks of down regulation and started the stimms two days ago.

This is incredibly hard due to pain. I had surgery 4 months ago and still have daily pain with my endo. After starting this cycle I developed constant chronic back and pelvic pain.... Due to my age and risk of further surgery damaging my ovaries more, we decided to just go for it and hoped the down reg drugs would help settle the pains! (Nope!)

Not even sure if I will make it to egg collection as terrified the pain is going to get too much as my ovaries get overloaded with follicles and eggs! But gritting my teeth to get through and being determined to not let the pain or endo win.

Anyone else having a really rough time with pain? I'm allowed codeine, for now, though it's really not ideal. No idea if I actually get pregnant how I would cope with this level or more of pain!

Any success stories would be welcome ladies xx

6 Replies

  • Hi I suffer with endo as well and have just finished the long protocol and had ET. I have been In quite a bit of pain the whole way through too.and so bloated.I have two cysts on my ovary so probably that. Egg collection was fine I did have period type pains but like you trying to gritt my teeth and get through it. Good luck x

  • Thanks for posting... And letting me know I'm not on my own! I'm glad you made it to ET and I wish you luck with this cycle and fingers crossed you get a positive test on test day! Did you have to resort to pain killers at all? I've been told I can take codeine for the time being, but I've just started stimms and trying to manage on paracetamol (pain is so high, I would normally be taking codeine, paracetamol and naproxen at this point!)

    I'm hopefully aiming for egg collection Wednesday 19th.... Seems so far away and like I have a mountain to climb with this pain. But my wonderful husband is totally waiting on me hand and foot making it as easy as possible for me. I also only have to work one afternoon (Monday 17th) , otherwise I'm off on holiday from now until early November, so that will help tremendously.

    I am seeing my GP this week and asking for more advice as concerned what is causing the pain... It's not clear.

    All the best Hun. It's such a hard journey xx

  • No problem. This process is hard enough without the added pain and worry!! I have tried to avoid anything other than paracetamol after ET especially but it's hard. Have yo seen your clinic about the pain? Good luck xx

  • Yes, it is hard and the pain really is unwelcome! I think I will have to manage on paracetamol as much as I can. I've googled and some clinics seem OK with patients taking codeine during stimms, but I would rather try my hardest not to.

    I'm not under an endo clinic at the moment.... Unfortunately my consultant saw fit to discharge me when I saw him 6 weeks ago as I said I was doing IVF. (Despite me saying I still had pain and that I have endometriomas growing back already). My IVF consultant is also part of the endo clinic and she has said about taking codeine for now.

    I'm looking to travel to get a new specialist who I think will have more experience with complicated and severe endo like I have, seeing my GP on Thursday. But I'm also waiting for my medical and surgery notes before making an appointment (privately). Then I am hoping to go NHS from there with treatment and surgery. So I'm in limbo a bit at the minute.

    I'm not looking forward to egg collection! Been through it once, and whilst not too bad, I wasn't in this pain. Plus I worry about ohss as I had this last time after EC. Hopefully I will avoid it this time.

    I hope the 2 week wait isn't too stressful and goes quickly for you. All the very best and I will keep my fingers crossed for you x

  • Hi Flowerpotts. So sorry to read about all the pain you are suffering at the moment. Do try not to get constipated on top of things when taking codeine. Just wondered whether you have ever been referred to a pain management clinic? Might be worth looking into if you haven't already. Not easy for you, but I do wish you huge luck this time round. Thinking of you. Diane

  • Hi Diane, thanks for posting. Luckily if I take only 30mg or lower of codeine I find I can avoid constipation... I learnt the hard way after my first surgery.

    I have been through a pain clinic before, as I was diagnosed with pudendal neuralgia 12 years ago. But I may well need to go to one again.... I'm hoping though that the current pain has a treatable cause. I know I still have endo that needs removing and I found out I had adenomyosis a few weeks ago, so I may need to think seriously about a hysterectomy once I'm done with IVF. This is our last attempt as I can't put myself through this again and just want some sort of life back now. Suffered far too long.

    Thanks for the good luck... Defo think we will need it! X

You may also like...